Nolan Weber

Location

Jackson, MO, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

April 2011

Status

Deceased

Treated At

St. Jude Children's Research Hospital

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My Story

What Would You Do?
An Essay of My Journey Fighting Brain Cancer by Nolan Weber December 2012.
What would you do if you lived in a small town that had recently learned 2 children had been diagnosed with brain cancer? What would you do if you knew them both, and was rather close to one of them – spending time with him in an attempt to brighten his spirits? What would you do if during this time you were a Sophomore in high school, 3 weeks from turning 16 years old, and you had a seizure during school one day? What would you do if by the end of that same day had had been taken by ambulance from your local hospital to a children’s hospital and then informed that you have a rather large brain tumor? What would you do if within a week of that day, you were being rolled away from your closest family and friends, and about to have your head cut open and part of your brain removed? What would you do if that tumor turned out to be a very aggressive Type IV brain cancer?
What would you do if your surgery took away the use of the Left side of your body while you fought like crazy to rehab? What would you do if you couldn’t do the things you loved most –for me, soccer and baseball- anymore due to the cancer and that surgery? What would you do if when you needed your friends the most – they no longer included you or came by to see you? What would you do if you couldn’t stand needles and now you were getting stuck seemingly non-stop for blood test and medicines? (Get use to it – it will be your life from now on). What would you do if you not only missed the rest of your school year, had to stop playing sports, had a scar across the top of your head from ear to ear, had to do daily rehab just to get back to doing basic things you had done your whole life, tried to act like you understood why your friends stopped coming around, but also had terrible acne since your were taking steroids to prevent swelling? What would you do if you lost out on your entire Summer break while you had to get up at 5 o’clock every mourning for 7 weeks straight, drive 100 miles for 10 minutes of radiation therapy, drive 100 miles back home, and then sleep most the day due to your chemo medicine? What would you do if you had waited all summer long in anticipation of taking a vacation to the beach – to get away from everything you were dealing with – only to have limited physical movement, have everyone stare at you like You are a disease, and have strangers make fun of you missing your hair from the radiation and chemo? What would you do if by later that summer – after rehabbing to the brink of tears for months – you were running through your small town in preparation for your upcoming school soccer season, and again, had strangers call out making fun of your hair?
What would you do if prior to your cancer you were on track for a soccer and /or baseball scholarship, but now you were relegated to sitting on the bench since you still had limited movement and the coaches were afraid to let you play? What would you do if you actually got to play a few minutes of a sport you loved so much, only to quickly lose your balance and go face first into the ground – and oh yah – also have the opposing coach ask your coach “what’s up with that kid’s hair”? What would you do if one of those kids with brain cancer from your town lost their battle against it, and the other one was falling fast? What would you do if you noticed some physical changes to your body and were afraid to tell anyone? What would you do if you had to have additional testing done due to those changes? What would you do if your life as you knew it – came crashing down again for the second time in 6 months – as you found out your cancer had returned – only this time lower in your brain where surgery would NOT be an option?!! What would you do if for 3 straight months you were placed into a new clinical trial with a different chemo medicine each time –only to fail on each trial and be ‘kicked out’ of each one? (Each time your new tumor grew and once even doubled in size over a month.) What would you do if during this same time, you watched your younger friend – whom you had spent time with trying to help him cope – also lose his battle to brain cancer and then attend his funeral? What would you do if your parents had asked for second opinions from the very best neurosurgeons from across the U.S. – but got the same answer every time? What would you do if you could tell your doctors were running out of options? What would you do if you could tell your parents were very scared? What would you do if secretly you were scared to death, but thought you had to be strong – so you didn’t want to tell anyone how scared you are?
Here’s a quick recap … overnight I went from being strong and the picture of perfect health – to someone fighting cancer. My dream of playing soccer and/ or baseball in college has been put on hold. I didn’t do anything to get cancer! I didn’t do anything to deserve any of this! A small mass of cells in my brain that don’t belong there have completely flipped my entire life upside down. Thanks to them, I’m on a 504 plan at school, get to sit the bench instead of playing, walk with a slight limp, do therapy several times a week, do everything with my Right hand –which sucks!, require help getting dressed, no longer get included in school activities, spend most of my time alone, can’t apply for the colleges I’m most interested in because I have to stay close to home for medical assistance, and about a million other nuances I don’t have room to include. Oh yah, and I USE TO worry non-stop about my future.
I titled my essay ‘What Would You Do?’ because there is no blueprint of how to handle pediatric cancer. No right or wrong. Everyone has a different, unique story of their own. What works for someone, may not work for someone else. I think the biggest thing to remember is that You Are Not Alone! Unfortunately, there are too many young people facing this fight. Just know that someone somewhere can relate to what you are thinking and going through. And don’t let someone else’s story impact you in a negative way. We may be similar in that we are fighting pediatric cancer, but we are unique in who we are and the journey we are on. The biggest single thing I wish more people – especially young people- understood is that anyone battling cancer is the same person they were prior to the cancer. Our path may be altered, we may be limited physically, our chemo may make us more tired or change our appetite, etc. – but we ARE THE SAME PERSON we always have been (Only STRONGER)! We need our family and friends in our lives NOW more than ever!!! Please! Please! Please!
Hopefully you noticed that I said I use to worry non-stop about my future. Now I only worry once in awhile. The following was my game changer … towards the end of 2011, everything changed for me. During that time my family invited our pastor over. We hadn’t received any good medical news in a long time. Honestly, there really wasn’t any reason to even be optimistic. In speaking to our pastor, we all decided that it was time to stop hoping – or even begging- and time to just truly start BELIEVING! By the end of the night, my dad had written ‘BELIEVE’ on every glass and mirror in our house. It was the first thing we saw in the morning and the last thing we saw at night. It prompted my classmates to initiate a ‘We Believe Day’ that my entire school (1000 students & teachers) participated in. Before long, the whole community was involved. A number of local businesses posted ‘We Believe’ on their signs. My story made the local newspapers, magazine, and TV station. A family friend initiated a ‘Prayer Day’ for me. Then the biggest thing of all happened…I was at my oncologist, getting ready to initiate a round of chemo that my doctors had put off for as long as they could. It was going to be nasty stuff – kind of a last ditch effort –since nothing else had been working. They really did not want to have to do it, but felt they had no other choice. Right before they brought the medicine in – they had already prepared it – they got a phone call from St. Jude Children’s Research Center saying they just got an opening for an ongoing clinical trial and wanting to know if I was interested. I really didn’t know anything about it – or St. Jude’s – but I didn’t want to take the other nasty chemo. Turns out the chemo medicine at St. Jude’s has my entire first name –NOLAN- spelled right in the middle of it. I’ve been on that medicine for a year now, with NO GROWTH of my tumor!!
I still have an active brain tumor that I deal with every second of every minute of every hour of every day – but I no longer worry! I know without doubt that GOD knows me, loves me, and has a plan for me! And get this –HE knows you, loves you, and has a plan for you too!! Just think - when we beat cancer – there will never be anything we can’t accomplish or overcome!!
What would you do?? I hope you’ll join me in Being Strong, Fighting the Good Fight of Faith, and no matter what –Always Believing that GOD loves us and through HIM, we Can Beat Cancer!!!!! Thank You.
Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.

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